Family celebrates 15th anniversary of life-saving liver transplant

Friday

Dec 26, 2008 at 12:01 AM

DARTMOUTH — Kendra Raposo, 20, acts like any other young adult, hanging out in her bedroom, chatting with her boyfriend and planning Christmas vacation with her friends. Her parents, Maria and Daniel, are relieved to see their daughter doing so well, especially since they came so close to losing her. Today is the 15th anniversary of the operation that saved Kendra's life — a liver transplant that gave her a second chance but left her deaf from complications.

Jennifer Lade

DARTMOUTH — Kendra Raposo, 20, acts like any other young adult, hanging out in her bedroom, chatting with her boyfriend and planning Christmas vacation with her friends. Her parents, Maria and Daniel, are relieved to see their daughter doing so well, especially since they came so close to losing her. Today is the 15th anniversary of the operation that saved Kendra's life — a liver transplant that gave her a second chance but left her deaf from complications.

"I thought I was going to lose her," Mr. Raposo said. It was "like a nightmare."

Now that she is healthy, he said: "I'm very happy. I know she's doing fine. She's doing very, very good."

When Kendra was six weeks old, she became jaundiced, and her doctor immediately sent her to Children's Hospital in Boston for testing. Specialists determined she had liver disease but did not know the cause. Kendra was given medication and was eventually put on a waiting list for a liver transplant.

"She was always on medication; she had to have special formula," Ms. Raposo said. "She was constantly in the hospital; her color was always jaundiced."

One day, when Kendra was 4½ years old, she started vomiting blood. The family rushed her to the hospital, where she was soon hemorrhaging blood as quickly as she was getting transfusions. Soon she was in a coma in the intensive care unit at Children's Hospital.

"All of her organs started shutting down," Ms. Raposo said. "Every day they would tell us, 'Look, there's nothing we can do.'" Kendra was so sick that she was taken off the transplant list because, even if a match was found, she would not survive the surgery.

The family did not give up hope, however. Instead of taking Kendra off life support, as some of the doctors urged, they prayed and kept the faith that their little girl would improve. And slowly, she did improve, enough to be placed back on the transplant list, albeit with only a 1 percent chance of survival.

On Dec. 26, 1993, doctors told the family there was a liver for Kendra, and she was whisked away for a 14-hour surgery.

"The wait was unbearable," Ms. Raposo said. "We just paced the floor the entire evening."

Kendra survived the surgery, but doctors doubted she would ever recover beyond a vegetative state due to all the infections she had endured and side effects from medication.

Her parents realized immediately that their daughter was not the same one they had known just months earlier. She could not walk or talk, and she had to be toilet trained again.

"She was like a little child again," Ms. Raposo said.

A few months later, they realized Kendra was deaf, as well. The girl who once could speak both English and Portuguese could now barely communicate.

That would change.

Kendra was enrolled in a program for deaf children at Pulaski School in New Bedford. She quickly mastered sign language, and Ms. Raposo learned what she could, as well, so she could communicate with her daughter.

Kendra went through elementary school and middle school in local public schools, but she longed to go to a school that specifically catered to deaf students. She is now enrolled at American School for the Deaf in West Hartford, Conn., where she lives Monday through Friday. On weekends, she goes home to Dartmouth to visit her mother and brother Daniel, 18. Her parents are now divorced, and her father lives in New Bedford.

"She loves it there," Ms. Raposo said. Kendra has an on-campus job working with some of the youngest students, helping to wake them up, dress them and take them to breakfast in the morning. In the afternoons, she works with the maintenance department doing odd jobs. She spends time with friends and recently decided to donate her hair to Locks of Love.

She has taken the ACTs and will graduate next June, Ms. Raposo said. And, like many other young adults, she doesn't know what she wants to do next.

Fifteen years have brought many changes in technology to aid deaf people in communicating with each other and the rest of the world. Kendra has a video phone that allows her to see the person with whom she is speaking so they can sign back and forth. She is constantly sending text messages on her BlackBerry. And for talking with someone who can hear, she can call a special phone number and sign to an interpreter, who repeats the words to the person listening on the other end.

"Years ago, there wasn't any of this technology," Ms. Raposo said.

Fifteen years can also bring a family out of despair and transform a sick child into a successful young woman.

"This little girl wasn't supposed to live," Ms. Raposo said. Now, when her liver transplant doctor sees her for an annual checkup, he can't help but smile.